Many of our close friends and family often ask "how are the kids doing"? Most people do not understand what Juvenile Rheumatoid Arthritis (JRA) really is and how it deeply affects Jake, Hannah, and our entire family! Sometimes all I can do is walk away, hide my tears, and just pretend all is okay! We share this JRA Journey with you and hope you can pray for Jake and Hannah and the other 300,000 children who suffer from JRA.

My JRA Heros

My JRA Heros- Jake & Hannah

Tuesday, May 7, 2013

Always Learning.....Autoimmune Diseases Keep Overlapping!

I received a email this week and on the bottom header, It really got my attention. Did you know?

Did you know that TODAY:
*50 million men, woman and children are in pain from arthritis
*140,000 people with arthritis will visit their doctor
* 3,750 joints will be replaced
* Arthritis will be the largest category of disability claims filed
* Arthritis will cost this country $350M
* 3 people will DIE today from arthritis

Our family also learned about another auto immune disorder, Relapsing Polychondritis. No matter how seasoned we are, there is so much more to learn and to continue to advocate and help find a cure. Last week, we had our regular rheumatology appointment and I was proud to share I thought there had been improvement with both Hannah and Jake. Then, I casually mention that Hannah has a new symptom of her right ear getting HOT and RED. I didn't expect to hear anything in response, but instead I was informed about the possibility of Hannah having RELAPSING POLYCHONDRITIS. I had never heard of such a thing, and asked for clarification and spelling of it. Dr. S shared with me as to how it affects various tissues of the body, including ears. More questions were asked, and I am to watch Hannah closely for inflammation in the ear when it turns red and hot and watch out for throat pain or hoarseness in her voice. He also shared it requires much more AGGRESSIVE treatment, than Hannah's current treatment. I asked what could that possibly be, and the answer I didn't want to hear...... Daily oral prednisone is the first line drug, combined with Methotrexate. I HATE METHOTREXATE and STEROIDS!! Hannah already gets IV steroid infusions every 14 days it messes with her in so many ways. We will NOT claim Hannah has Relapsing Polychondritis and continue to ask for it ALL to go away!!

What is Relapsing Polychondritis? It is a uncommon, auto immune disease in which the human body's immune system begins to attack and destroy the cartilage tissues in the body. Tissues that can become inflamed include the ears, nose, joints, spine and windpipe (trachea), heart valves, rib cage, and sinus cavities. The eyes, heart, and blood vessels can also be affected. It is also sometimes called the "red ear syndrome". Initially, the most common sign to look for is a painful, red and swollen ear. Fever, fatigue, and weight loss can also develop. It affects 3-5 people per million in the US, and can be life-threatening. It is potentially a dangerous disease and with inflammation of the cartilage of the windpipe (trachea), heart, aorta, and blood vessels, it can certainly be fatal. There is no one specific test for diagnosing. Relapsing Polychondritis can be associated with rheumatoid arthritis and ankylosing spondylitis.

We also got a brief report on Jake's recent Gastric Emptying Scan he had at Shands Hospital in late February. Jake had this gastric emptying test to help measure the time it takes his food to empty from his stomach and enter his small intestine. It also is to help us to figure out why Jake is vomiting, having abdominal pain, and having a hard time gaining weight. His scan studies indicated that it took Jake 91 minutes, which was slightly abnormal and took longer than normal for his radioactive eggs to leave his stomach. Not really sure what is the next step ??? We are in limbo and awaiting our new medical consult appointments at Vanderbuilt. In the meantime, Jake has lost a few pounds that he had just gained in March. His GI issues are still a mystery to us. We can't figure out his pattern and explain why he vomits when he does? Sunday was a beautiful day- and we decided after church to go to a park to play a bit. As much as Jake wanted to play, he kept coming back to me, complaining he didn't feel well. Once again, he didn't make it an hour before vomiting. There goes any calories he had consumed that day!

On a positive note, we received Jake's chest scans back from the Pediatric Cardiologist. Happy to share there is NO MASS!! Hip Hip Horray!! Jake overall had a good, healthy Cardiology appointment. His ECHO and EKG looked good. He wore a event heart monitor- we are still awaiting final report, but am assuming no news is good news. The cardiologist believes most of Jake's chest pains come from his severe costeochronditis. We were well aware Jake has severe costeochronditis and has had it severely from initial diagnosis. What we did learn is that Jake has a chest deformation, called Pectus Carinatum. Pectus carinatum occurs when the cartilage of the ribs and breastbone (sternum) undergo excessive growth, causing them the sternum to protrude. It may worsen when Jake has growth spurts or becomes a adolescent. There are basically two options to treat this as Jake gets to be in his early teens. 1) External Bracing 2) Surgery. We are certainly going to pray that Jake's deformation does not progress over time and that he is not bothered by the appearance and can remain active without further issues.

Our family will continue to pray for a CURE and support the Arthritis Foundation. Our dream is to find a cure and much better medications to treat these monster autoimmune diseases that affect so many children and adults. Thank you for those of you who have donated to the Arthritis Foundation or are walking this month to support my kiddos!

5 comments:

You are so incredible and I thank you for your willingness to share your story and to raise awareness and funds. I continue to hope alongside of you for that cure and no more overlapping conditions. I wish it would all go away...much love.

I'm sorry to hear about all of the new things affecting your kiddos. I have to say that I just found you today and I am so grateful. I grew up with systemic JRA as did my sister. Whenever I talk to people about how we both have it, I get crazy faces and comments. I wish your kiddos didn't deal with these issues too but I am so grateful to find another family like mine.

Hi there, I'm Lindsey! I have a question and would love to speak with you. Could you please email me when you have a chance? Thanks so much, I look forward to hearing from you! lindseyDOTcaldwellATrecallcenterDOTcom

Hello. I am so sorry I didn't respond earlier. I haven't been up update with my blog and overlooked your interest in connecting. Trheidi@gmail.com is my email, as well. I'd be happy to chat and share any helpful knowledge of our journey.